Thursday, July 24, 2014

An amazing CF Mama wrote this essay in response to this story in the news about a girl with cystic fibrosis and a discrimination complaint against a national women’s group

Dear American Association of University Women:

You kicked her out.

You kicked her out?

Devyn Solo, she is bright...determined...upbeat. I don't even know her, but I know that much about her. She is brave and empathetic too. I know these things because she is just like my daughter.

My daughter also has cystic fibrosis.

You would kick her out too, I suppose.

These bright girls...smart, vivacious, ready to go for what they want. You would read their applications and think “YES!” You would interview them and say afterwards “Wow!” You would peruse their recommendations and smile wide and and nod. These are the girls you WANT in your STEM program.

Responsible girls.

Smart girls.

Girls with sparkle and spunk.

Girls with dreams.

And you would send them letters saying “congratulations, you have been accepted...”

And then you would kick them out.

Because their cells misbehave.

Because they were born that way.

With cystic fibrosis.

Because they have to take pills when they eat. Which they have been doing on their own since they were 2 or 3 or 4 years old. Even at school. On their own. These pills pose no threat to other students, they are enzymes that everyone (without CF) manufactures in their bodies.

That is too much for you. So you kicked her out.

Because these girls would have to plug in a couple of machines to do breathing treatments and chest physiotherapy twice a day, you would kick them out. These machines...technology...engineering and math required to create and run effectively...these machines scare you? They must. Because you kicked her out.

Cystic fibrosis is a genetic illness; nobody else in your program was at risk. CF is a genetic illness, she did not ask for it. She asked for an opportunity. To learn and move towards her dream. And you gave it to her. But then you took it back.

You kicked her out.

These girls, Devyn and my daughter, they have so much more to deal with every day than most kids. They work really hard to stay healthy, to look healthy, so they can do the things they want to do. They face needles and x-rays and IVs and medication after medication...just to keep even with the other kids. And they try to stay positive about themselves, their talents and skills and their ability to make it through to their goals—college, a career, a family.

You were right there, ready to give Devyn a positive experience, to be a stepping stone towards her dream. And then you kicked her out.

Because you were scared. And uneducated. And untrusting of her.

You kicked her out.

You kicked her gut. You knocked a girl down. You made her question if she can do it...because she's sick. You crippled her sense of who she is; made her wonder what all the extra work is worth if she won't be allowed to do things that other girls can do even if she is healthy. You did not empower her. Not in science. Or technology. Or engineering or math. You kicked her out.

Shame on you.

And to Devyn, keep on shining. Keep on taking care of yourself and studying and being a positive young lady. You will reach your goal. You will make them sorry they missed out on the opportunity to have a girl who LIVES science and technology in their camp. Stay active and take your medication. Because with or without the AAUW, you, Devyn, kick butt!

Monday, July 7, 2014

I'm on vacation and it feels so good. We're one block from the bay and two blocks from the beach. The weather is delightful. We're in a "No shirt, no shoes, no problem" kind of town. I'm writing this, only two days into our trip, so that I don't forget by the end of the week, when patience is low because exhaustion levels are high, just how good it felt, if but for a few days, to be on vacation.
Technically speaking, we will be "on vacation" for a whole month. We're not returning to Cincinnati until early August. We've started our trip in Stone Harbor at the beach for a week. Next we will head to Philadelphia, with a sidebar trip to Hershey, where I have a date with a good girlfriend and the Spa at the Hershey Hotel. We will wrap up our month-long vacation extravaganza in southeastern Connecticut before heading back to the midwest early next month, hopefully refreshed.
The lead up to this trip was a bit hectic. We needed new swimsuits and towels, sunscreen and water shoes. Medications needed to be ordered and shipped to arrive at the right place at the right time. I needed to coordinate schedules and hold the mail and pack a lot of stuff. So far, I'd say it's been worth it.
I've taken each kid for a walk, alone. I honestly don't think I've done that since my 6yr old was my only baby, and that was for a mere 18mo. We walked and talked, holding hands and making plans. We discussed favorite parts of our trip, which range from watching Frozen in the car to playing in the ocean with Pop Pop. They've each picked out a new hat and bough a little treat. I'm seeing how different they are individually than when they are together. I wish I had more time to dedicate to this. Often when I have an errand to run in the evening or on the weekend, I grab one kid to take along. This time we are spending together at the beach is different, because we've nowhere to be but here. We're just walking, exploring the island, and I love it.
I'm sure that by the end of July we will be ready for our own beds and our regular routine. There's something settling about falling back into your routine. There's also something real nice about being able to break out of it for a while. Cheers to vacation.

"65 Roses"is what some children with cystic fibrosis call their disease because the words are much easier for them to pronounce.

This blog, 66 Roses, is dedicated to finding the cure.

Cystic fibrosis is a life shortening genetic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). Thick mucus clogs the lungs and leads to life threatening infection. The pancreas is also obstructed by this thick mucus production, imparing digestion and leading to malnutrition. - www.cff.org